Monday, February 15, 2010

so lets see we have gone thru 32 days of the 58 days of Dh's school training in georgia. so we have about 25 more to go. before you ask, no im not counting down the days, keeping a tally of all the doc appointments or therapy sessions, pay days, or trash days until he comes home......yea right. haha. im practically counting down the hours. lets see thats approximatly 612 hours, 36,720 minutes, or 2203200 seconds until he is back home!

Thursday, February 11, 2010

at the point when i withdrew the boys from public school for homeschool i had many people thinking i was crazy, i was one of them. mikey had ocupational therapy 2 times a week that i was dragging him out of school for, plus any out of town appointments he, chance or zach had, so i reasoned with myself that he was missing to much school as well, and he was. zach had therapy coming out to the house 4-5 times a week, plus his doctor appointments, the boys had their psychologist and developmentalist they were seeing plus the normal appointments. life was crazy, and here i was adding fuel to the fire. sigh.

its been a few months since homeschooling has started, and things still get a bit scattered about but were making it. mikey has sence been diagnosed with high functioning autism/asperger's, in addition to the SPD, ADHD, and sleep disturbances, chance had his iq tested at 4 and scored for a 5 year old at the 98%, i was told by the psychologist he was VERY advanced and was genius-like. he is also being tested for being somewhere on the spectrum of autism, or a mood disorder, he is being treated for ADHD in addition to his sleep problems, we still battle with his asthma and him getting croup each season. Zach has remained well and is doing better each day. in june 2009 just a couple months before he turned 2 he sat up on his own! in july he was crawling, and saying mama!! we were sooo happy. he was hitting milestones. he is still fed thru his gtube, he has recently been taken off many of his medications, only taking previcid, pulmicort, viagra, and diuril now. thats a small handful compared to his 13ish when he first came home. he is trying to pull up and walking small steps in a gait trainer. his diagnosis' are chronic lung disease, restrictive airway disease, pulmonary hypertension, pulmonary hypoplasia, repaired congenital diaphragmatic hernia, repaired subdural hematoma, gtube fed, scoliosis, 33 week preemie, hypotonic, brain atrophy, microcephaly, severe global developmental delay. compared to where he was a year ago he has come so far and will continue to thrive!

with all the changes life has thrown our way in the last 10 years my outlook has changed and my opinion on life has changed. i have new stressors that replace what i use to think of as stress. but i have new rewards in my life that make me glad each day i have with them.

with all the issues zach has with his lungs we dont use chemical cleaners in the house anymore, mainly vinegar and baking soda, for everything. its much healthier for us all. were trying to eat healthier, im even learning recipes for making things from scratch. were trying to eliminate our processed foods, rid ourself of those toxins and be more mindful of the enviorment. zach still recieves his RSV shots for the seasons sept thru april due to his fragile lungs but we have decided other than that and his hep shots due to the frequent blood transfusions he has had in the past and may need in the future the boys and us will no longer be immunized with anything. after finally doing our own research on the chemicals in the shots we have decided we dont feel comfortable injecting the posions to our kids. im not sure if any of the shots may have helped to contribute to the autism spectrum disorders or not, but i know now that its not right for us.

so in all after all the rambling, thank you for being so patient, our journey has led me to this path, one where i want to protect our family from everything i can. i want to make our own food, school our children, not vacinate them, keep them away from as many chemicals as possible, some say im trying to live in a bubble... and i will agree. but its my bubble, im not insisting anyone join us, so dont pop my bubble:)

ive become more outspoken, i know more about medical mumbo jumbo than i ever thought was possible, im learning how to stand up for what we feel, without worring is everyone going to be okay with our decisions, im learning how to be more self sufficient, trying to grow our container garden, stock up on food items we can use in case of an emergency, im addicted to couponing, i love sale shopping and thrift shopping, i enjoy making food from scratch now. i enjoy homeschooling the boys...this is the new me. i think i have found my calling with my boys and all their medical mumbo jumbo....................

around 2 years old we also learned that chance had asthma...he had had 2 severe cases of croup and then the diagnosis hit. he also had allergies and ezcema, and had a small growth on the side of his cheek, we found out was juvinile melanoma and had it removed thru surgery. life seemed to be spinning out of control, but we were managing and doing okay thru it.

April 2007 we learned we were having our 3rd child, shortly after in May i had a small accident in a 711 and had dislocated my knee 12 times in 12 hours, i was in PAIN, on meds, that i wish i could have avoided being pregnant. i was in a knee brace with a walker for about 2 months, i had ocupational therapy myself to help me get up and moving again. in july i was out of therapy and by the 19th we had our BIG ultrasound scheduled, i couldnt wait to find out if we were having a boy or girl! i was so excited. the ultrasound tech said it was a boy, and then got very quiet a few moments later the OB came in, my heart sank, i was afraid, i knew this ment something was wrong, but there is no way i could have prepared myself for what was coming. i was told my son had Congenital Diaphragmatic Hernia, i didnt know what those words ment but hernia didnt sound to bad. then i was hit with the knews of what it ment, i was told abortion was a option. we met with a ob councelor and a case manager who helped set up future appointments with specialists for the baby. i was devestated. the same day we were scheduled to move into our new apartment on post, a bigger place to accomidate the new baby, only now i was told there may not be a new baby coming home. we researched and found the best doc we could in houston to deliver Zach. Zach's delivery came early, on Zach's time, as everything soon would. i was life flighted to houston in labor in a helicoptor, i had signed the proper forms saying i understood the risks of flying while in labor, that i understood the risks of already having scar tissue from previous csection, that i knew i could potentially die, i could have placental abruption and both me and Zach die. but what other choice did i have? stay at the local hospital where they know NOTHING about zach, his needed care, they didnt have proper machines to keep him alive after birth. if we stayed he died, point blank. i HAD to go. the life flight team was wonderful, and the OB department took over. by morning the contractions hadnt stopped, labor was still progressing and when the amnio was done to check zach's lung growth, maternal blood was found...showing that my placenta was indeed abrupting. the csection HAD to happen NOW. luckily Harold was with me, the boys were with his parents (a whole nother story) and on oct 26th at 805am, Zach was born at 33 weeks weighing in at 4lbs 7 ounces, 18 inches long. he was intubated immediatly and i didnt get to see him till that night.

Zach stayed on the vent to breathe for him, thru his surgery to repair the hernia at 5 days, he remained on the vent until christmas morning when he self extubated (remember i said everything is done in Zach time) he seemed to be doing well as far as i could tell. he was still needing oxygen and at the time a CPAP machine to help deliver pressure to his lungs. in january we left houston and transfered to a closer hospital to home, by this time we needed to be with the boys more, mikey was being cared for, or rather not cared for, by my inlaws and chance had come to stay with us at the ronald mcdonald house after only a week with the inlaws (they couldnt handle him) mikey would have been with us as well had it not been for school.

Zach remained in the new hospital for 3 months, i found the care at this hospital to be awful and really felt like we had to get him out inorder for him to survive! he left the hospital after his second surgery to place a gtube, this was how we fed him his formula thru a tube and syringe as he still wouldnt allow for oral feeds. after only having him home for 5 days Zach went into respitory failure and was sent back to the same hospital but the PICU this time not the NICU. the PICU was a God send, my faith was restored with the caring doctors and nurses, the atmosphere was much different than that of the NICU. Zach was on the vent again for 6 weeks before we were able to get him back on a nasal canula (portable oxygen) after tweaking some meds and getting new scripts we brought Zach back home. this time he was home for about a month, when he had a seziure, the seziure we later learned was caused by a bleed in his head, called a subdural hematoma, it was repaired and we were told it was "old" blood, unsure how the injury occured, and that he had brain atrophy from this. he was sent home on seziure medication as well. up until this brain surgery zach didnt respond to anything, didnt smile, he cried alot. he was fussy, and would just lay all day. after the surgery we saw him SMILING!! it was a miracle. he started to slowly respond to things and "wake up" in a way to his world.

Harold again left for korea this time in october, only about 6-8 weeks after getting zach home from this brain surgery. times were tough. we had nurses inside our home all the time to help, and while it was help, it was a bit "odd" as well. we had therapists coming in as well. many appointments each month to see his specialists, his cardiologist, his pulmonologist, his neurologist, his orthopedics, his GI doc, as well as all the "normal" baby things. needless to say in all of this the boys issues kinda got put on the back burner for a while. shortly after though we started ocupational therapy for mikey though and started to dig further into their issues. with new medications for mikey and chance sleep got better, moods got better, things were looking better.

Harold was gone for a year, when he came back chance was in pre-k and mikey was in 2nd grade. both boys were having problem and issues in school, mikey was hiding under his desk, chewing his clothes, unable to pay attention, complaing the room was to loud and kids were mean and on and on, he wasnt keeping up with his school work and was having an overall bad experience. chance was getting in trouble for "always bumping into kids" (remember i said he was a crasher) and for having to walk circles around you when he talked and unable to sit quietly when needed, he had verbal tics that he would do when he was nervous and it would inturupt the whole class. it was taking a toll on both me and them. it was one more stress i didnt see the point for anymore. i withdrew them both from school after the first 9 weeks and started homeschooling.

Wednesday, February 10, 2010

as i left off in the previous post, mikey was just quirky, he was very intellegent though, operating computers, going on websites, he knew it all! i was amazed! around the time mikey was 4 his baby brother Chance was born, Harold left 7 days after he was born for his second tour of Iraq. chance seemed to be developing ahead of schedule, holding his own bottle as soon as he had it at 4 months, i had given up breastfeeding him because he was soooo hungry all the time. once he latched on to the bottle he kept it for the entire feeding, there was no burping him or anything, he was devouring it, inhaling it. he started solids at 5 months and soon was eating EVERYTHING. the "quirks" we had had with mikey seemed to have "skipped" chance, he didnt mind getting dirty, he wouldnt make a peep if he pooed all over himself, thus unlike mikey he was HARD to potty train. he crawled sooner than mikey had, he walked sooner. he was a daredevil! Harold came back home from iraq when chance was 1 year old, and life was good. while Harold had been gone i had been battling sleep issues with mikey, he just didnt seem to "shut down" he was "always going" always moving, he could litteraly stay up from 6am to 3am and do it all over again. it was exhusting. we went to doctors, some said to try benadryl (didnt work) some said to wear him out...i tried. (mikey wouldnt play outside, because "it was hot" or "he would get sweaty" or "dirty") it was ALWAYS something with him. finally a doctor told us to go see a psychologist, she told us he had ADHD and to try melatonin. aaahhh finally the wonder pill....HE SLEPT! again life was good, Chance turned 2 and started the SAME sleep issues, this time i knew what to do, and it worked. we began seeing psychologist again, and the term "sensory processing disorder" was approached again. this time, more information...words like Autism were tossed out. Autism i thought...no he doesnt sit emotionless in a corner rocking, thats NOT my son! man was i UNIMFORMED on the subject. mikey was labled with SPD, ADHD, sleep disturbances, and possibly autism? what the heck? i was blindsided. but that didnt explain chance...chance didnt have SPD, he just didnt sleep. thru therapy we learned that chance probably did infact have SPD, but on the opposite end, he was the dirty,dare devil, loud, crashing into you kid. mikey was the quiet clean kid.

Tuesday, February 9, 2010

i dont know that i have ever sat and said this is me, im this or that. but if i had done so in the past i know that it has changed drastically since i married, since being married to a soldier, since growing up, becoming a mom to a son, becoming a mom to multiple sons, and even more so to medically fragile child and special need children to begin with.

i cant even begin to describe in words most days. in highschool (this is the only "before" i can really relate to, as i married out of highschool)i was shy, not outgoing, would be considered a conformist i guess, i never did anything to make myself stand out, never wanted the extra added attention. let me also say i still dont do anything out of my new "normal" to draw attention. i married my highschool sweetheart 6 days before he left for basic training for the army, this was pre-9-11, we werent "at war" there didnt seem to be an impending war approaching, at least not to me, i never watched the news, i knew very little to nothing about other contries, i had lived in the same house in the same small town, gone to the same school my entire life. my life was stable, it was comfortable.

after being married and after basic training we learned we were to move to Germany, a country i knew nothing about, thousands of miles away from my family, my friends, my life. i left on a hope and a prayer that this was the right decision. we lived in Germany for 3 years, 1 of those years i HATED it, i HATED everything....i was still a child, and homesick! we had our first son shortly after arriving in Germany and it started to grow on me, this was "home" i met some friends and began to enjoy life. then 9-11 happend, our world was shattered. we were "at war".

Harold quickly deployed to iraq, the first deployement was about 7 months long. i stayed in Germany, afraid to go home, afraid to leave my new home, afraid he may never come back home. little did i know this was only the begining of our deployments, our seperations. Micheal was about 15 months old when Harold came back from iraq, suddenly life was normal again. at Mikey's 18 month check up they told us his fine motor skills were lagging behind, as well as his speech, he seemed pretty "normal" to me and i was in denial i guess. they had us fill out some questionairs and they assessed him some more, i was then told he had Sensory Intergration Dysfunction, now called Sensory Processing Disorder or SPD. i had no idea what this ment. for us it ment a few months in speech and ocupational therapy in Germany and that was the end of it. i wasnt accustomed to the internet much,didnt "google" it, didnt learn anything more than what i was told that day. it really just didnt seem like that big of a deal. so what my kid couldnt stack blocks, or hold his spoon, he walked into walls alot, he fell...he was clumsey! so what if he only knew 10 words by the time he was 2, he was cute as a button and soooo smart with electronics, he could work the vcr, the tv, the dvd player and computer...he wasnt "behind".

then one day right before he turned 2 years old, just a couple weeks before we were to leave Germany and move back to Texas, Mikey had a seziure! i had NEVER before seen one, i was alone in the apartment when he had it, we had no phone, as we were about to move, i was young i didnt know what to do, i scooped him up automatically and raced down a flight of our stairs to the nearest neighbor at home, whom i hadnt met and begged to use the phone. i called Harold and he raced home, we took mikey to the ER where he had 2 more seziures. we were quickly taken to the German hospital and admited. for about a week we were in the hospital waiting to find out WHY and WHAT was going on. in the end, Ear infection was the cause...his fever spiked really fast, not really high though, just fast, and sent his body into a febrile seziure. we were sent home with antibiotics, however we had no "home" at this point, we had already cleared, or rather, Harold had already cleared the apartment and given the keys up, we were in a small 1 room hotel until our flight out of country. mikey continued to have seziures every couple of months when his fever would spike fast, each time we were told he would probably never have another, each time he did. he finally "grew" out of them when he was about 4.

since moving back to the states, we kinda put the whole Sensory processing disorder on the back burner, there was alot going on, with the move, finding a new home, getting situated and accostomed to our new life, and i thought mikey had pretty much outgrown this. "he was quirky" i would tell my mom, he would line cars up in one direction and knew if you moved even one of them, he didnt like to get dirty (worked in our favor for potty training, he trained in 1 week with cloth underware) didnt like the way certian foods felt, the grass, bubbles in his bath, water over his head...but hey, we had no one else to compare this to...he was "just quirky" he loved to watch things spin...hotwheel cars, fans, sippy cups rolling on the floor...

Monday, February 8, 2010

i was told it was an option, many times the doctors informed me, asking and waiting as if my answer would change.... my answer remained the same. it isnt an option. its not my choice to choose not to give life to this baby inside. its not up to me to decide if he lives or dies. the odds of him making it thru the pregnancy arent good, and his prognosis if he does even worse, quality of life deminished, still i stood solid by my answer, NO.

i prayed silently, i prayed loudly, i prayed daily for a miracle, and everyday i wake up and see that miracle smiling back at me. it was never an option, never even a question in my mind. the answer was simply NO.

well we have been getting lots of weather and lots of cold weather, really not to fond of either of these. in fact i pretty much despise them both at the same time. but what can you do? for me, i suffer from S.A.D. as well as generalized anxiety and depression, the lack of sunlight is a real bummer. i tend to want to lie around and do nothing, i find my mood is a bit more aggitated and snappy. did i mention i DONT like this kind of weather? too bad we are looking like we will continue this way thru the week.

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About Me

hi, im a mom to three wonderful blessings i call my sons. Mikey is almost 9, spunky, sneaky and full of energy oh yea and he has aspegers, and adhd. Chance is almost 6, he is a cuddle bug and a big helper, he is super smart too:) Chance has asthma, allergies and pdd-nos, like his brother he is also on the autisim spectrum. Zachary is our youngest, at 3 years. Zach was born with a rare condtion called congenital diaphramatic hernia and currently has a feeding tube, is oxygen dependent, has brain atrophy, reflux, scoliosis...yadda yadda, he is the happiest baby ever! the boys are all a blessing, and we are lucky to have them:)
im married to my best friend, and high school sweetheart, who is a soldier in the army, we have lived in Germany, and Texas and have endured many seperations to both iraq and korea. i love crafts though im not very inclined to do many, i love reading though i dont get much time, and internet research. i try to remain positive and thankful even on rough days................